Guilty

I have long struggled with feelings of guilt. Give me a scenario, interaction or circumstance and I can usually find something that I said or did to feel bad about. Adelaide’s life exacerbated this in some ways: I should be doing more to help her, more PT at home, more research, more, more, more. And quieted it in others: I don’t have the capacity to feel bad about not volunteering at Jackson’s school when I’m holding Adelaide during a seizure. Her death did the same: I’m clearly a horrible person for enjoying the parts of our life that are significantly simpler without her, like traveling by plane, car, or you know anywhere outside our home. And even now with Strawbaby: she has brought so much joy into our lives but how can I be happy when it came at the cost of a broken family?

I even feel guilt for feeling guilty. How effed up is that? It’s like a crazy guilt loop that I can’t escape. While the sources of my guilt spirals are immeasurable I have recently found one source that I can separate and eventually use as an exit ramp.

I’m an emotional person, always have been. I have big feelings that sit just below the surface and come up for air at, all too often, the worst possible moments. For most of my life I viewed this as a weakness. I was labeled dramatic, over-dramatic, a drama queen – all of which I recognized were not positive descriptors. So, I practiced shrinking these big feelings by leaning into my more rational thoughts. Labels aside, big feelings were exhausting and sometimes painful – being more rational appeared, if not healthier, certainly happier.

It took years – basically most of my 20’s – to quiet my feelings. They didn’t go away, they were still there, I just didn’t give them the space or time I once had. As I sit here writing this today, I’m fairly certain this internalization is directly linked to the rise in my anxiety. 

Again, Adelaide’s life exacerbated this suppression. If my feelings were big before I was making life and death decisions for my child on a daily basis, then during that time they expanded to epic proportions. However, I couldn’t give them much air because their reality would have destroyed me. I had to keep going, pushing forward, an inchstone at a time. I clung to logic, to the ones and zeroes of life, I made dark jokes about Adelaide’s conditions, I compartmentalized, I survived (meanwhile my anxiety ballooned).

By the time she died, I had no more strength to push my feelings down, I was also fed up with logic – try to make the death of a child make sense. In grief I finally felt like I had permission to be as emotional as I naturally am. No one was going to call me over-dramatic for being upset about my child’s death, in fact it was expected. I leaned in.

But now it’s been three and a half years and again I find myself trying to balance my emotional and rational sides, or, as is the case more often, push down those pesky emotions. This is where that guilt I mentioned earlier comes in. I’ve spent so much of my life feeling guilty for my big emotions - emotions bad, logic good – that I neglected to see that those emotions were actually a sort of superpower. You see, in a different context, some of those big feelings could be called something else: empathy.

In fact, when I took a step back and looked at the source of some of my guilty feelings, I realized that what I was feeling wasn’t guilt at all, but empathy. It’s not that I feel guilty that our life is simpler without Adelaide, it’s that I empathize with all those whose lives are strained by systems that don’t accommodate medical complexities and disabilities. That empathy motivates me to continue to advocate for these marginalized groups and to fight for better solutions, treatments and cures.

It’s not guilt I feel about Strawbaby’s family breaking apart and our family growing as a result. It is empathy that I feel for her parents who were dealt a crap hand in life. That empathy will help me frame future conversations with Strawbaby about her birth parents and, hopefully, nurture future relationships with them.

Not all of my emotions are empathetic and not all of my guilt is misidentified empathy. But some of it is and that realization has helped me feel less guilt both for feeling guilty and for those big emotions I once scorned. Like many aspects of life, our emotional/rational thoughts and expressions operate on a spectrum. One end is not better than the other and we will roll from one end to the other at different times of our life. While I aim for some sort of balance, I am now actively trying to not suppress my emotions - at least not out of fear of weakness or critique. Because while I may be an emotional person –I know that I am far from weak.

Now, I just need to try and make sure that my emotional mini-me doesn’t take 40 years to come to this realization as well…

Image description: Kelly is wearing a red and purple floral dress. Jackson iis wearing a red, blue and green button down shirt. They are on a NJ transit train smiling with Jackson leaning his head on Kelly’s shoulder.